Evaluation of two family-based intervention programs for children affected by rare disease and their families – research network (CARE-FAM-NET): study protocol for a rater-blinded, randomized, controlled, multicenter trial in a 2x2 factorial design

BACKGROUND: Families of children with rare diseases (i.e., not more than 5 out of 10,000 people are affected) are often highly burdened with fears, insecurities and concerns regarding the affected child and its siblings. Although families caring for children with rare diseases are known to be at ris...

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Opis bibliograficzny
Wydane w:BMC Fam Pract
Główni autorzy: Boettcher, Johannes, Filter, Bonnie, Denecke, Jonas, Hot, Amra, Daubmann, Anne, Zapf, Antonia, Wegscheider, Karl, Zeidler, Jan, von der Schulenburg, J.-Matthias Graf, Bullinger, Monika, Rassenhofer, Miriam, Schulte-Markwort, Michael, Wiegand-Grefe, Silke
Format: Artigo
Język:Inglês
Wydane: BioMed Central 2020
Hasła przedmiotowe:
Study Protocol
Dostęp online:https://ncbi.nlm.nih.gov/pmc/articles/PMC7678588/
https://ncbi.nlm.nih.gov/pubmed/33218310
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1186/s12875-020-01312-9
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